Emily M - ROOM TO BREATHE | thriving at home

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About Emily:

Born: 2000

Diagnosis:

Omphalocele, restrictive lung disease, scoliosis, thoracic insufficiency syndrome

Challenge:

Emily was born with omphalocele and a small thorax, which combined with the curvature of her spine, doesn't give her enough room to breathe. Eating is an issue.

Solution:

PHS respiratory therapists provided ventilator and oxygen support, while PHS dietitians managed g-tube feedings and oral supplements.

Result:

Emily has been weaned off her vent/trach and is feeding herself orally. Seeing Emily today, says her mom, Janita, "you would never imagine that she has gone through what she has. She's just a normal nine-year-old girl."

Trouble eating and breathing

Born with multiple congenital problems, Emily struggled to do things most kids do without ever thinking about them: move, eat, and breathe. Born five weeks early with omphalocele, underdeveloped lungs, scoliosis, and a small thorax, Emily spent her first six months in the hospital—a situation further complicated by the fact that her family lived six hours away in northern Minnesota.

Meeting medical and mileage challenges

The family knew getting Emily home was best for everybody, but worried about making the transition. "It was scary," recalls Janita, "but PHS is amazing. Becki did an awesome job calming our fears and making sure we had the education we needed. She even spent the Fourth of July with us just to make sure we were okay." Distance has never been an issue. "PHS is always there for us."

When Emily first came home, she had 24-hour nursing care and was on a large non-portable vent 24 hours a day. With the help of PHS, she was weaned off the vent in only a year and received a g-tube that helped her gain six pounds in four months, enough to allow her to have surgery to insert metal rods in her spine and titanium ribs to expand her chest cavity.

Free to be a kid

Today, Emily uses some oxygen at night and will have surgeries on her back until she reaches skeletal maturity. But she can do almost everything other kids do— including eat pizza—and her parents hope someday she'll no longer need the g-tube or any oxygen. In the meantime, Emily is free to be Emily.

Download Emily's full case study PDF (1.0 MB PDF)